P3.C042: Experiences of Families with Children/Youth With Special Health Care Needs in a Focused Emergency Preparedness Intervention

Background: Families with children and youth with special health care needs (CYSHCN) have enhanced requirements for staying safe in disasters and emergencies—but tend to have low levels of household preparedness. Our interdisciplinary research team recently found improved preparedness metrics in a diverse sample of 170 family-caregivers of CYSHCN recruited from medical homes across Pennsylvania who participated in a virtual home preparedness intervention (VHPI). The VHPI included (1) CYSHCN-centered pre/post interviews on preparedness, the child’s medical needs, and social determinants of health; (2) tailored preparedness information and a gift card; and (3) as-needed referrals to professionals in the medical home and community partners for resources. It culminated in semi-structured interviews (SSIs) (Table 1) in which participants provided feedback.
The objectives are to explore associations between participant sociodemographic factors and experiences in the VHPI—especially those related to preparedness barriers.

Methods: The SSIs were audio recorded and transcribed verbatim. Using NVivo, conventional content analysis was applied to assign codes and identify sample-wide themes. Using cross-tabulations in NVivo and review of excerpts, the team then assessed whether participants with certain sociodemographic factors were disproportionately represented within certain themes.

Results: The participants (n = 143) had CYSHCN with reliance on medical equipment (64%), physical mobility needs (48%), intellectual or communication challenges (80%), and/or vision/hearing loss (39%) (Table 2). Emergent themes included (1) preparedness as a missing piece of health care, (2) expertise and action (3) self-efficacy, and (4) compassion and flexibility (Table 3). Prevailing preparedness barriers were limited financial resources, time constraints, communication with the CYSHCN/family, and access and functional needs of household members. Whereas quantitative analysis of this sample (data not shown) demonstrated that living with an individual with a disability/functional need, in addition to the CYSHCN of focus, was associated with higher preparedness scores, the qualitative analyses indicated that these individuals were less likely to say that they felt confident in their preparedness or had no remaining preparedness barriers.

Conclusion: Participants generally felt that the VHPI was effective, attributing this to its delivery by an activated, supportive team. Future work should address incorporating elements of the VHPI into preventive care visits for CYSHCN in the medical home.